Infants who need life-saving surgery understandably cause their parents enormous anxiety. This will of course affect all those among whom they move at a stressful time like this: doctors and nurses, E D staff, their other children, and their extended family and even close friends.
It is sad but true that the great majority of parents who post online about their infant’s surgery for pyloric stenosis (“PS”) mention at least two things –
- The diagnosis of their baby’s condition was for them a distressingly demeaning and unnecessarily extended process, not only because of the general medical practitioner(s) involved but also due to pediatric specialists and emergency department staff. The other almost universal complaint is that
- this time was the most traumatic event they had ever had to endure.
This situation continues to amaze and infuriate me.
- PS is by no means rare.
- It occurs in between 2 and 5 babies in every 1,000 live births (in developed countries).
- The symptoms are almost always quite clearly recognizable by the time parents seek medical help.
- Quite often nowadays parents have done some homework and what they report about their baby can easily be verified.
- In most cases PS can be quite quickly and accurately diagnosed starting with the classical, observable signs that have been used for a century, and without the need for lab work and imaging.
I urge our readers who work (or may work) with sick babies and their parents to read the two articles to which I have provided links.
One is a news item from an English newspaper which tells the story of a child with many problems, most of them rare and complex. It is amazing that despite clear symptoms, her PS was not discovered for 18 months! The PS cannot have been life threatening, it would have been masked by the child’s other maladies, but once again, clearly identifiable symptoms seem to have been missed for a long, long time!
The other link is to a lengthy letter from the parents of three children, each with serious medical conditions, including one with PS. This very articulate letter addresses the substantial underlying reason for the problem I raise again in this post.
The problem is not that many doctors lack an encyclopedic knowledge of the huge list of medical conditions and their variable symptoms. Nor is the real issue that not every medical practitioner has a special knack of diagnosing the reason for a health complaint.
The problem is attitude. Unwillingness to listen. Lack of goodwill towards, patience with and respect for patients. Not only that, but all too often a doctor’s attitudes deeply offend and distress the parents of a very sick infant: a superior, patronising, often denigrating and dismissive manner.
The letter mentioned above expresses well the recognition that many doctors do their work with skill, sensitivity and kindness. It also conveys that parents and their little patients are (later) deeply grateful for the restoration of normal life and health.
But why do so many of the most vulnerable and anxious “consumers” of health care keep expressing outrage and pleading for much better care from medical professionals?
The present situation must be urgently addressed by medical schools’ selection, shaping and training of their students, and also by the relevant professional bodies, and by far more effective mutual accountability and quality assurance policies and programs.
Most of us can only describe the problem and plead and challenge the medical community to work towards improvement…
Is anybody listening?